Thursday, May 23, 2013

An ultrarunner on wheels: The truth about why I'm on the bike

I was going to title this "It's Not About the Bike," but I think that title has been taken.

It's true though: it's not about the bike.
I am an ultrarunner. It is part of my identity, how people know me and how I know myself. I have been running ultramarathons for 15 years. I think I was an ultrarunner before I ran my first ultramarathon, but I just didn't know it yet. I started before the "Born to Run" craze and the masses of people, before the general public even knew or cared about. In fact, we just didn't even talk much about it back then. We runners just got together and ran long distances. We supported our local "Fat Ass" races and those were often our favorites - the low-keyed, no frills, no awards, no whining kind of races. When somebody new showed up (like when I did), that person was approached by the veterans and taken under their wings. Anything you ever wanted to know about running a 50k or a 100-miler you learned from them while on the course, if you could keep up. So you kept up. They were social events but that doesn't mean there wasn't fierce competition. There was! And yet it was the winners who stuck around at the finish and cheered in us middle-of-the-packers. Sometimes we hung out afterwards, but often we just went home to our families and to our jobs the next day.

I am not old school. I am too young in the sport to be old school. I did, however, grow up in the sport with old-schoolers so I learned the old-school ways of ultrarunning. I am forever grateful I got into the sport then. It was a sport filled with humility and kindness, camaraderie, and mentoring. There were no coaches. You didn't pay to learn. You learned by doing and by failing and by succeeding, and then you shared your lessons. That's how it was done. I loved it.
I still love ultrarunning. It is an amazing sport. I call it a sport only by convention; I prefer to call it a hobby. It is my hobby. I did it in my spare time. It is lower on my priority list than the important things in life like a my wonderful supportive husband, my family, our pets, my job, and friendships. So, for me it was a hobby, a hobby I loved.
I loved it because I could run and run and run, be outdoors, perhaps run from the stresses of life, but certainly more so running TO the real substance of life like freedom, gratitude, and the love of nature. I loved the feeling of being able to run forever. I loved the sharpened senses. I loved the power in my own body, the freedom of just getting up and going. People who know me know I've run "minimalistic" since the beginning. Other than a bottle of water with a few jelly beans in my pockets if it were a hot day and I thought I might be out there for 4 hours, I never really prepared for a run. My shoes stayed laced up; I just slipped them on and ran.

I ran primarily trails until I tore all the ligaments in my ankle in 2005. After that surgical repair, I had to learn to like the roads. I never did learn to like the roads more than the beautiful wildflower-drenched trails, but I did learn to like them. At least I could run.
I did find that through those road-running years that I was decent at the road ultras. I ran Badwater and placed 3rd in 2004, and ran it again in 2007 and placed 1st. That's when I thought maybe I could do well if I tried a little harder. So I did. I ran the Spartathlon in 2009 and DNF'd, and I will never forget those DNF lessons! Those lessons involved suffering on a very intimate level and I have discussed that suffering with one person only, my husband Tim. I learned so much about myself at that race. And I applied that to the next year where I placed 3rd woman overall in a highly talented and experienced international field and I took the podium with pride.

I had also been running 24 hour races, the races that Yiannis Kouris calls the true ultramarathon distance (as opposed to the 100 miler). I am of the Yiannis school of thought here. There is something far different about a fixed time (24 hours or more) that tests you differently than a 100-miler. You may disagree and that is fine. This is just my opinion.
I learned to love the 24-hour fixed time event, and I got decent at that too. I placed 3rd at Nationals in 2011 and that qualified me as an alternate for the World Championships in 2012. I was feeling good about my hobby.

Then it all changed.

Fast forward to now. I am on the bike. I am biking a lot (for me). I like the bike very much. In prior years, I have done many century rides with little training in decent finish times. I often supplemented my running with biking because I liked moving faster! But I was still a runner.
Now, I am not running and am only on the bike. Being new to the cycling crowd, people ask if I am new. (I must have that look about me.) They do not know me as an ultrarunner. I say yes, "I am an injured runner on a bike."
It's a flat-out lie. However, it's the perfect answer. First, it allows me to avoid the truth about why I am on the bike, and second, cyclists (or pretty much anybody for that matter) love to hear about running shutting down an athlete. (Ok, maybe an over generalization....) They feel solace in the blame. It's a sport that "ruins your knees," a sport that they used to once do but can do no longer. It's the perfect answer. Usually, the conversation jumps immediately to a friendly consoling nod and a story about how they once ran. Like I said, it's the perfect answer. But it is a flat-out lie.
I am not an injured runner. I am not running because running betrayed my body. I did not suddenly get arthritis in my knees or a stress fracture in my foot. Running didn't betray me. Running is still waiting for me to come home. Only, I don't know if I will ever come home to it again.

I ran my last race in May of 2012. It was the WSU 100k, and I ran it to win. I ran it and I won and I set the Master's Course Record. I felt good about meeting my goals, especially because it was incredibly hot that day. Whatever though. Nobody really cares about that. Nor do I, really. It was just a nice day on the hot and hilly roads with help from my friend Gunhild Swanson and running together with Scott McMurtrey, as we traded places taking the lead through the stiff head wind for 10 miles. That's really what I remember most about the race. The personal accomplishment and the friends.

Well, I never recovered from that race. Having always been one to race 100 miles Saturday and Sunday and to go to work on Monday, that was unusual. No big deal. I gave myself time off. My real goals were the World Championships in Poland in the fall and actually making the team, not only as an alternate. I was pretty sure I could do it.
I had been sick before that WSU race, a bad flu-like sickness in April that prompted me to see my doctor and eventually to inquire about a tick bite that I got while in Tennessee that month. I hate to say it, but she kind of brushed me off. After weeks of sickness, I asked for the minimum 3-week course of Doxycylcine to treat possible Lyme. It seemed to me a small price to pay to insure that something bad doesn't happen down the road. And for whatever it's worth, I don't usually go to doctors. In fact, I don't like going to doctors at all. So, it took a lot of concern for me to go. And maybe my delay in starting that treatment was detrimental. I don't know.

So, anyway, I got better from a whole body perspective. But I developed a gradual weakness in my leg, in the inner thigh, and over the course of a few months, I watched horrified as the muscle withered away. I developed knee pain (maybe because my upper leg couldn't support my knee) and I also developed a strange foot drop that occurred only when I ran. My foot turned inward and after several falls, I started to pay attention. I still ran. I just moved to the right side of the road where the banking seemed to make up for my lack of inner thigh muscle strength.

I saw my doctor and said, "Hey, I'm worried. Something is very wrong." She said, "Hm, I don't know. What do you think?" Now, I don't mind a doctor that doesn't know. I often don't know. But on the other hand, I never just leave it at that. But anyway, I asked for some labs and she sent me to an internist. The internist was nice but also didn't know. She reassured me my heart and lungs were excellent, and she even did a gyne exam and said all is well there. Great. Thank you very much. I wasn't concerned about that. But anyway.

This started a piecemeal diagnosis process that is not yet finished. The mystery is not resolved. I have spent hours and hours and hours googling this and googling that and reading this and that, and trying to find someone who can help me google this and that. To no avail. Yes, I have had wondering concerned friends who have extended a hand and even tried to get me appointments with doctors or physical therapists, but the hardest part was that I could not devote the time I needed to take to tackle this problem. First, my self-employed insurance had a huge deductible and I burned through that in no time. Then there was the out of pocket pay. By the end of the calendar year, I was broke. I am still paying on those medical bills. That, and every time I wanted to make an appointment somewhere, I couldn't do it because I already had patients on my schedule and, believe me, it is very difficult to cancel patients because you, yourself have a problem to tend to! That is not readily understood by one's own patients. So, my appointments were scheduled one or two months down the road. Hence the drawn-out piecemeal process.
I won't bore you with the details. I am not writing to figure out why I am literally losing my leg. I am writing to tell you the truth about why I am on the bike.

In brief, however, I saw a vascular surgeon (thought it may be some clotted artery blocking blood supply). Frankly (I am one to be frank), that exam was a joke. But he didn't think it was vascular. He said maybe I should MRI everything from the waist down. Now, I don't know if you know about MRIs, but everything from the waist down is a lumbar, sacral, pelvis, thigh, knee, leg and maybe foot MRI, if you want to go down that far. Of course, he said I should do both sides so they have a comparison. That's at least 9 MRIs! What the hell is medicine coming to?

So, I got a lumbar MRI. I have a bone-on-bone disc at L5-S1 but it's not pinching nerves. Not the problem.
I MRI'd my knee. No problem. (Looks like all my years of ultrarunning kept me arthritis free after all!)
I saw an Orthopedic surgeon. He suggested MRI'ing the thigh.
I got the MRI of the pelvis, and bilateral thighs. This is what it showed:

Extensive scar tissue consistent with prior high-grade tear/avulsion extending from the musculotendinous junnction of the left gluteus maximus along the posterior aspect of the proximal femur. Scar tissue is also seen at the iliac origin of the muscle. There is moderate associated muscle belly atrophy. The findings are consistent with prior high-grade tear/avulsion injury. And there is atrophy of the left quadratus femoris and adductor magnus muscles, possibly post-traumatic.

Hm.
No, I hadn't had a traumatic accident. I called the radiologist. I told him I was a runner and asked if this could be from overuse. He laughed and said, "This is why I don't run more than 2 or 3 miles at a time." Thank you very much for your help.

I went back to ortho. I thought I found my problem. I was happy. I tore my butt muscle. Seriously, I was so happy. Ortho tested everything, scoured the MRI, and told me that the tear wasn't the problem. He felt it was neurologic and that an EMG would help. I tried to do one on myself but it was kind of hard. Ridiculous actually. I just wanted to be the patient for a change!

I went to Seattle and had an EMG done by one of the best. He told me there were "minor abnormalities" but nothing bad, basically. I have since tried over and over again to get a copy of that report to no avail. I also never received a bill. So there.

So, I went to a neurologist, a colleague of mine in Spokane. Before even seeing me, I was escorted to the EMG room and told to put on a gown. I informed the MA that I already had an EMG a few weeks ago. In the end, I was scorned as a "non-compliant patient" that "refused" an EMG. I did get the exam by the neurologist and he said it was an orthopedic problem, that I should go back to ortho. He did note that I was hyperreflexic in my left leg, but he said he didn't think it was a problem. I asked if he thought I should get a brain MRI to rule out MS or something like that and he said "No, with MS you would have trouble walking. You didn't report any trouble walking, only with running, so MS is not likely." I told him I did indeed have trouble walking, but that I noticed it more if I tried to run (and by the way, at this point, I wasn't even able to run across the street without tripping and falling). He said, "Ok, walk." So I did. "Nah" he said, "Looks ok to me. Let me know if you develop trouble walking." (I will not write anything more here because I was taught that if you don't have something good to say....)

So, I went back to Ortho. He said it's Neurologic.
I gave up. I literally gave up.

I had already bought a trainer for my bike so that I could bike during the winter months. I had to do something. The novelty wore off quickly when the days got warmer, but then I did survive some cold weather rides in early spring. I complained a lot about the cold because, unlike running, you can't bike faster to generate more heat and stay warm. No, that just increases the wind chill. I made it through those colder days and into the nice warmer days hinting of summer. I love the outdoors! I love the sun! I love the heat! I love nature! I love to move! I love to explore! I love to feel physically tired!

You may wonder, why can I bike if I can't run? The answer is that I do feel the weakness, but it is much easier to compensate on the bike with my feet clipped into the pedals. It is non-weight bearing, there is no impact. I can do it. I must concentrate on keeping my left thigh/knee inward because the ITB is working unopposed, but that is now starting to become more of an unconscious thing. I feel the weakness most on the hill climbs, which makes sense. But I don't really give a.... darn, because at least I can bike.

No, I am not a cyclist. I am a runner. I am not an injured runner on a bike. I am a runner with a weird unexplained weakness that is getting slowly worse over time that is on the bike because that is all I can do. I like the bike, don't get me wrong. But I would much rather choose to be on it than have no choice.
I have tried all the cognitive self-talk like, "It could be worse, Lisa. At least you can bike." And while that is true, I am still left with completely unanswered questions about what the hell is going on with my leg. Why? I just want to know the answer. Only then can I deal with the reality of it. I need to know what to expect from the future. If this is temporary, that's great. Though I don't really see how that would be. If it is permanent, then fine, I will never run again. As much as it sucks, I can learn to deal with that. If it is progressive, then what "it" is and what, if anything, I can do. I honestly would rather lose my leg in some traumatic accident than have it slowly wither away while doctors say, "You seem to be able to walk ok..."

Back to the doctors. I did find a good one. I sent a note to my primary care doctor and told her I was sick of the medical community dropping the ball. I said that because it's true. She offered to refer me to another neurologist. I elected to see one of them, another colleague with whom I have worked. I saw him recently. And bless his soul he said there was an obvious and serious problem! He acknowledged the muscle atrophy and weakness, and he also expressed a grave concern about the hyperreflexia (since that indicates a brain or spinal cord problem). He didn't have the answer and I didn't care. The best thing about him is that he listened and he acknowledged and he cared enough to try to help me with where to go from here. He even told me to follow up with him in a few weeks. I was giddy happy when he said that. Follow up? You mean you're not dropping the ball? He is a very good doctor.
So, in the end, he thinks perhaps it is thoracic spine in origin, or maybe even a neurologic sequelae of Lyme Disease.

I have my thoracic MRI at 7 am tomorrow morning, and I am awaiting my appointment for the ID doc and maybe I will have the joy of experiencing a lumbar puncture by him (aka spinal tap).
In the meantime, I am on the bike. This is why.
I am on the bike because I can't run, and I don't have a diagnosis or a prognosis, which is the hardest part.

In any case, for the first month on the bike, I cried every single time I rode. I couldn't help it. No matter how good I felt to be out and moving, I cried. I cried because, as much as I liked being on the bike, I missed running. I was a runner on a bike.
It's getting better though.

I am adapting somewhat. I even hired a coach despite my earlier remarks about coaching and "old school" ultrarunning. I hired him because I signed up for the Furnace Creek 508, which is in October, and I'm not sure I can ride 508 miles in 48 hours on a bike! While I may not be able to run, I still have the "overdo it" gene. So, I feel better with this goal. And my coach is great. You see, I need to learn everything about the bike, how to ride, how to train, how to endure, how to get good enough to finish (which is my goal). Fortunately, the best coach for me lives right here in Spokane. And I am pretty sure it's a good thing, because yep, he is a course record holder at the 508 and has won it multiple times! I like him for the structure, the guidance, and the encouragement. I do think, however, that he is going to kick my ass as the months roll by and the 508, which is in October, gets closer. I don't mind having my ass kicked though. So, thank you Coach (Michael Emde at Emde Sports ) I sure do hope you decide one day to run Badwater as I'd be thrilled to coach you! :)

So, anyway, it's not about the bike, but I'm working on that, and I'm on it, and at least that part is getting better.

I am so hopeful that you get your much needed answers. Hate to hear that you're struggling. If things do happen for a reason, I'd say that your powerful voice and insights will definitely resonate with others, and if more people shared their experiences it could be a step towards much needed changes within the medical community. A lot of us have experienced similar frustrations, but aren't quite as good at verbalizing them! You're awesome, Lisa. So keep biking, writing,hopefully running- whatever. Hell, write a book! Bet it would be better than Lance's anyway! Just keep being you. p.s. Lyme's is prevalent in this area and can really wreak havoc.

Lisa, I'm so sorry you've had to play physician roulette, so many health care providers have no idea how to work with healthy athletes or understand the mentality of an athlete. It echoes the frustrations I had with my thyroid disease diagnosis. I'm hoping you get some answers, and end to your frustration, and the care you deserve. I know that you will find a way back to running if it is a possibility. And I am hoping you will get good news.

Thank you for sharing this Lisa. Have wondered about what you are going thru but didn't want to be rude and ask. So much of what you are going thru is challenging...I wish for you some freedom - freedom of an answer and hopefully freedom via healing. You have always been someone I look up to and appreciate your grace and strength. Best wishes to you.

Lisa,I'm so sorry to read about this - the frustrations, the weakness, all of it. I love hearing your true voice coming through - woven throughout is that positive, "I'll find a way" Lisa that we all know. It's cliched, but you make me think they can knock you down, but you will always get back up! I'm glad you are finally finding some answers. On a personal note, your story sort of makes me feel better. I've been told countless times by cardiologists that my defective valve can't cause the problems I have at times, and I've had a zillion tests that don't find anything. I honestly have wondered if I am just not fit enough or am hypochondriac. Though I'm sorry you have had a similar experience, it makes me think maybe it's not me, maybe it lies in doctors not knowing and brushing me off. Thanks for sharing.

My heart goes out to you as you work through the challenges ahead. It is evident having watched you run at Badwater that running is your love. I pray that this will be resolved. I'm happy you have Tim by your side.

I am going through something similar but my foot turns out. Same issues with the quad muscle and glute and it band. I bke but can tell something is off and the hills bring it out. I loved climbing in the mountains and now the slightest road incline provides discomfort. I have done chiro, pt, had graston techniques done, lumbar MRI and EMG but to no avail. I miss running n the mountains but truly concerned if I have something deeper going on. Hope you get some comfort in answers because that is all I want. Whatever the news I just want to start the healing process.

I am going through something very similar except my foot turns out on the right side. Used to lov running and climbing the mountains but now on the bike and can barely do an easy 20 miles without my it band on both sides and my quads blowing up. Took months off of all activity and o no avail. No answers lumbar MRI perfect, EMG perfect, chiro, pt and graston techniques still nothing. The worst part is not knowing. If I can't run that sucks but fine if I know how to just get healthy again. Hope you get some answers and comfort soon.

Lisa - I just get frustrated for you reading this, and what seems to be the lack of caring to get to the bottom of it by so many. I, too, dislike going to doctors for anything. Not based on any one thing, just a general aversion. I thank you for the simple diagnosis and treatment suggestions you have provided me from afar with little knowledge the past few years as a rookie in the ultra world. I truly hope that your new doctor will see this through for long haul, and help with answers to the open questions. Until then, stay strong and may the wind be at your back and the roads magically be all downhill for the 508. Do 510 just to show them you can! And don't take so long between blogs. You rite gud. ;)

Lisa: Thanks for sharing your story. It must be so frustrating. I know this may sound woo woo and far-fetched, and I know nothing about your current nutrition, but have you considered eliminating wheat and other food allergens. They really can affect your body just like you're describing, in some cases. Just thought I'd throw that out to you just in case. I hope you find the path to healing and happiness soon. Keep us posted.

Lisa: Thanks for sharing your story. It must be so frustrating. I know this may sound woo woo and far-fetched, and I know nothing about your current nutrition, but have you considered eliminating wheat and other food allergens. They really can affect your body just like you're describing, in some cases. Just thought I'd throw that out to you just in case. I hope you find the path to healing and happiness soon. Keep us posted.

Wow, Lisa! I am literally sitting here in tears. Mostly because you are such an amazing person who I know will endure. I send you all my positive energy for 'real' answers and healing. I'd hate the have the cycling community steal you and your spunkiness from the ultrarunning community.

When last I saw you... It is cheating, I know, to have a beautiful memory and not have to overwrite it. If you did not write well and I did not visualize well my last memory of you would be a beautiful run on a snowy day near the Spokane River. Now I have been sitting here for several minutes just staring at the screen and wishing for something wise, witty, reassuring, practical, encouraging, and, best or worst of all, believable to say. I failed.

Thank you for posting a message in response here and for sharing some of your own frustrations with similar experiences. The details may differ dramatically, but the frustrations connect us. I appreciate the encouragement too. It's hard for me to stay motivated despite all the self-talk to stay grateful and carry on, knowing that things could be worse, which is most certainly true. But sometimes you just have to express how you really feel in order to get to that point. Thanks for hearing me here. I really appreciate your comments.

About Me

I am an ultra runner, physician and have been medical director of some of the toughest ultras. I tend to be a mover and a shaker and louder than my size suggests. However, my Gemini twin is gentler and contemplative, an artist, a writer, and a poet. I am a dog lover, a believer in souls, and have a special affinity for those who struggle because I have been there.

This is my crazy lovable huggable Weimaraner, Steely Dan. I call him Steely. He left us in January of this year at only 6 years from lymphoma that did not respond to chemotherapy treatments. Steely was a total goof. He loved trail running, road running, treadmill running, new experiences, making eye contact, sleeping on his back, me, kids, and liver treats. He was Zappa's best friend. We miss him dearly.

This is Stella. A rescue from the shelter. She's about 6 months old and a Border Collie. She is a joyous bundle of energy and curiosity and now also Zappa best friend. She will make a nice running partner when she grows up.

This is the now the big brother of my family - a rescued Greyhound. His name is Frank Zappa. I call him Zappa. He's 7 years old and has learned all about life beyond the track and crate from Steely when he was with us. It was very rewarding to watch his personality bloom as he settled into the family. And yes, he runs like the wind!

This is Natasha, my dearest friend. She was with me through college, medical school, residency, and she moved with me from Chicago to Spokane several years ago. She was my best running partner for 10 years. My sweet Natasha died from bone cancer in 2006. I miss her still. I hung a windchimes over the deck outside. When it chimes, I smile and think she has finally -- wherever she is now -- caught a squirrel!